Tonic-clonic seizures can be very dangerous, and scary and confusing for both you and the people around you. But behind every seizure is someone with their own story to tell, and a community that gets it.
We asked young people and families to describe what a tonic-clonic seizure feels like. Their words are raw, honest, and full of insight. Whether you’re living with epilepsy, supporting someone who is, or just want to understand better - this is for you.
What is a tonic-clonic seizure?
You’ve described it to us as the one where someone suddenly drops to the floor, goes stiff, and your whole body starts shaking.
Here’s what happens:
Tonic phase: Your body goes stiff, and you may fall to the ground. You might make a sound, bite your tongue, or lose consciousness.
Clonic phase: Your arms and legs begin to jerk rhythmically. You may go blue around the mouth or lose control of your bladder.
Afterwards, you might lie still, feel confused, tired, or upset. You often don’t remember what just happened and may need time to recover
In Your Words: Powerful quotes from your community
These quotes come from our social media community, the Youth Voice Network, and Young Epilepsy’s own resources - real people, real experiences, and real strength.
It’s like a mobile phone getting bombarded with notifications.
A young person from the Youth Voice Network. A brilliant metaphor for the sensory overload that can come before a seizure.
I feel my world closing in while my heart palpitates before the big event.
Shared on social media. A vivid description of the aura - those warning signs that some people experience.
My head turns then my body stiffens up and I shake a lot - but I’m officially 1 week free!
A young person celebrating a milestone, showing strength and hope.
I get really hot all over - it feels like I’m roasting alive - then I get a painful headache and slur my words.
A powerful sensory description of what a seizure feels like from the inside.
When my 4-year-old has one, she says it feels like her head is going to burst beforehand.
A parent sharing their child’s own words, showing how even very young children can describe their experience.
My 2-year-old will throw his head back and start with no warning. Vegetative for ages after.
A parent describing the sudden onset and long recovery of their child’s seizures.
I suffered with tonic-clonic seizures before being officially diagnosed. The doctors delayed my diagnosis massively. Thankfully, medication helps now - but I still get strange sensations and memory lapses.
A young person reflecting on the long-term impact and challenges of living with epilepsy.
My son had two tonic-clonics early hours yesterday - came out of one and then into another a little bit later.
A parent describing the frightening experience of back-to-back seizures.
These are Alby’s seizures - completely and utterly terrifying and heart-breaking. We spent a portion of our lives in September thinking he wasn’t going to make it.
A deeply emotional account from a parent, highlighting the seriousness and unpredictability of epilepsy.
My son’s seizures started when he was 12. He’s now 18. The specialist says they’re deadly. The last few lasted 20 minutes. It still scares the hell out of us.
A parent sharing the long-term fear and uncertainty that comes with managing severe epilepsy.
These quotes come from our social media community and the Youth Voice Network - real people, real experiences, and real strength.
How to help someone who is having a tonic-clonic seizure
You told us what really helps when you're having a seizure, and we listened. This guidance is shaped by a powerful mix of lived experience and clinically informed expert advice, coming together to help others know what to do.
To help someone who is having a tonic-clonic (convulsive) seizure, follow these steps:
- Time how long their seizure lasts.
- Stay with them and make sure they’re safe.
- Move any hazards, like furniture, out of the way.
- Don’t move them unless it’s absolutely necessary, for example, if they are close to a hazard that cannot be moved, like an open fire, roads or open water.
- Be calm and reassure them, even if you think they can't hear you. This isn’t always easy, but it’s very important, especially when the person is recovering from the seizure and looking to you for reassurance.
- Make sure they’re okay and haven’t hurt themself.
- Don’t let people crowd around or film them on their phone.
- Please don’t put anything in their mouth.
- If it sounds like they’re choking, tip them on to their side.
- Put something soft under their head but don’t hold them down or try to bring them round.
- When they have stopped jerking, put them in the recovery position and protect their privacy.
- Listen to how they want to be supported.
- They might feel tired, confused, or weak, and they may need some time to rest.
- Sometimes they feel better quickly, but other times they might need more time.
Call an ambulance if:
- the seizure lasts for more than five minutes
- they have one seizure after another without coming round
- they have seriously injured themself
- they have trouble breathing or
- they don’t come to once it’s over
Share Your Story!
If you’d like to share your thoughts on how you would describe atonic seizures, or if you have tips for others, get in touch with Young Epilepsy. Your voice can help others feel less alone and more understood.
